Spring 2012: Sensory Integration & In the School - CdLS

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Super Siblings: Tessa and Taylor Six Questions for Tessa Tessa N. from North Dakota started baking cookies to benefit good causes when she was just 11. Now, a 20-year-old college student, Tessa reflects back on life with her brother Taylor, 23, and what inspired her to bake thousands of cookies over the years in honor of him and all people with CdLS. 1) What is your relationship with Taylor like now and over the years? Because Taylor was so small and slow to develop, my poor parents had two difficult babies on their hands after I was born, but by the time I was about three, I had taken on more of a caretaker role than a little sister role, and that has continued since. I felt, and continue to feel, very responsible for Taylor’s wellbeing, not because my parents put any pressure on me to feel that way, but because he is such a joy in my life, and I can’t imagine not wanting to make his life as wonderful as he has made mine. 3) How did you come up with the bake sale idea? The summer after fifth grade, I saw an advertisement for the Great American Bake Sale, which raises funds for children in the United States who are suffering from hunger. I love to bake, and it seemed like the perfect way to use my interests to give back. I held the bake sale for two years when I decided to give the proceeds to the CdLS Foundation. Last summer, I held my eighth bake sale, after missing one summer in high school. The change from the first year, with a little card table in the front yard with some cookies and bars and total earnings of about $350, to tents and many, many tables (still in the front yard), neighborhood involvement, and total earnings of more than 10 times that, is exciting for everyone who has been involved. 4) What did your parents think when you told them you wanted to do the bake sale? My parents have always been so supportive of everything I’ve wanted to do, no matter how crazy my ideas are. There is no way I could have done the bake sale without them. My mom helps me bake and clean (which is the worst part, obviously), and my parents’ donation to the sale has always been to buy the groceries, which is a huge help. 2) When did you realize he was different from you? From the very beginning, my mom and dad taught us (Tessa has two other brothers and a foster-sister) all about CdLS, and taught us tolerance and acceptance of differences, patience, and understanding. I always knew Taylor had special needs, and I also always knew that my parents were available for me to come to with any questions I had about what made him different. My parents never tried to pretend that taking care of Taylor was a breeze or that it wasn’t hard to manage a lot of times, but still, without neglecting my own needs as a child, they taught me by example that caretaking was not a burden, but a blessing. I was so fortunate to learn the value of taking care of others from them. REACHING OUT 10 5) How many cookies do you think you’ve baked over the years? I can’t even give you a rough estimate! Thousands and thousands. 6) What do you want people to know about Taylor? Taylor can’t be accurately described if he is only viewed in terms of his disability. For those who know him, it’s his abilities that make him who his is: his ability to make us smile, to find joy in something as small as a bluegrass song or a church directory, to win over everyone he meets just by flashing his dimples. At the same time, CdLS is an important part of who he is, and even with some of the challenges that CdLS presents, our family would never ask for anything different. www.CdLSusa.org
Mailbag – Gracey Belle – Dear Reaching Out, Gracey Belle has always struck us as unique. She is also amazing and so funny and tough and very smart. She is the cutest little thing, and we are so blessed to have her and our other sweet daughter, Hope. At 20 weeks pregnant, we were told that Gracey’s heart and brain measurements did not fall within normal range. These concerns were eventually relieved, to be replaced by others after she was born. It seemed that Gracey Belle was always sick and she had unique issues, like extreme acrocyanosis. Her limbs would turn blue, purple, even the color of charcoal at times. She struggled with a bit of reflux. She didn’t babble like other little kids her age. We saw these and other issues all as just little quirks. Our doctors had always seen something in Gracey Belle that we didn’t. They strongly urged us to see a geneticist. We just didn’t see anything wrong and maintained that she was perfect. She is perfect, by the way. It was eventually clinically diagnosed that she has mild CdLS. She takes some daily meds for her reflux. She got tubes in her ears that helped eliminate some of her illnesses. She has four therapists (speech, occupational, physical, and developmental) and she has flourished with them. She is babbling and constantly surprising us with new words. She is the happiest little girl we’ve ever met. She takes joy in the little things and is so fun. She has a wonderful big sister and extended family that can’t get enough of her. The process of getting the diagnosis was hard, and though it was tough at first, we bounced back pretty quickly. There was a peace in getting an answer after always having felt that she was fragile and that something unknown was going on. 1.800.753.2357 We want to offer encouragement to others in this situation. The shock and fear brought on by initial research can hit hard. There are wonderful stories out there as well. We have and will always fight for our daughter, and as she grows she is quite the fighter herself. We are so very blessed. We are so thankful for the help we’ve received along the way. We wouldn’t change a single thing about her. She is going to blow people away, showing all the amazing things that children with CdLS can achieve. Ginger, Gracey Belle’s mom Illinois Submit your Mailbag or Super Siblings Story! Send your story and photo to communications@CdLSusa.org. WELCOME NEW FAMILIES California Abigail and Kathleen and son, born November 7, 2011 Illinois Julia and Zach and son Benjamin, born October 6, 2011 New Jersey Karla and Manuel and daughter Krysmary, born January 18, 2006 South Carolina Carrie and Robbie and daughter Albree, born March 27, 2011 Texas Norma and Victor and daughter Esmeralda, born December 8, 1998 Virginia Sarah and Eric and son Micah, born December 30, 2011 Wisconsin Deb and daughter Josephine, born April 22, 1998 11 Spring 2012
Page 1 and 2: Reaching Out The Newsletter of the
Page 3 and 4: The Importance of Early Interventio
Page 5 and 6: ehavior. These activities should be
Page 7 and 8: Dr. Antonie Kline, the Foundation
Page 9: Foundation Heroes: Jim K. For Jim K
Page 13 and 14: Event Recap DivaDance DivaDance is
Page 15 and 16: Scott Tyner Dolores and Donald Sand

Spring 2012: Sensory Integration & In the School - CdLS

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